Wits End

[Anonymous]

(Sorry for a few typos – my phone wont let me fix them) Have any of you just given up and let your baby sleep on his/her tummy? My 15 week old has silent reflux. He sleeps wonderfully on his tummy. The doc told us to let him sleep on his tummy during the day when we can watch him. He has done so for 2 months now and is a whole different sleeper. At night he wakes often and can’t sleep comfortably after 3ish in the morning where we almost always end up sleeping the rest of the morning in the recliner. Even with his meds (3.75ml of compound Prilosec morning and night) which helps a lot, the wedge doesn’t work. He’s sleeping now on his right side in a sleep positioners and he hates it. He won’t sleep on his left side. I go back to work in August (I’m a teacher) and we just all need some sleep!

He can’t turn over yet, but he is lifting up his head pretty hood while on his tummy. I would never ever be able to live with myself if something happened to him because I let him sleep on his tummy, however he does fine there during the day. Thoughts? Opinions? I neeef advice from moms who understand how hard this is. My friends don’t get it. Help!

Cynthia

Zachary 3/13/10 – silent reflux. 3.75 ml Prilosec 2x daily

[hellbennt]

Hi & welcome!
you’ve found a great place for RESEARCH and SUPPORT!

Yes my boys were tummy sleepers- we also started w/ naps. There used to be a monitor called the Angel Care Monitor – ok here it is:
http://www.angelcare-monitor.com/United-States/en/products/angelcare-monitor-AC201
this might help ease your mind?

anyway: check your prevacid dose http://www.marci-kids.com/dosing.html
this is from the University of Missouri- they are at the FOREFRONT of the research being done w/ PPIs and infants/toddlers.
also please read Prevacid 101, last post on the page, to learn more about PPIs and why your compound may not be stable (it might be fine! but, the majority of posters on this forum have experienced trouble w/ them): https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

I have a lot more to say and most of it is found here, in a post called Groupie Intro- it’s looong, but truly will help you, so read/skim/scroll through and refer back to it:
https://www.infantreflux.org/forum/forum_posts.asp?TID=853

so glad you found us!
~laura

[Anonymous]

Thanks, Laura! I have been reading through the forums for a few days now and have read all about Marci Kids and the compound PPI issues. I have a doc appt soon and will be printing a bunch of things to show him about dosing. The Marci Kids site rates my kiddo at 1.25mg 3x daily. I’m not sure what that is in ml. The dosage calc doesn’t work on my phone so I’ll try it the next time I can get to my computer. I don’t know how I would survive without my phone! Zachary keeps me in this chair so much. Between comfort nursing and needing to sleep on me.

I’ve seen the angel monitors and it may come to that. We shall see! For the compounds…we use the pharmacy at our children’s hospital. The hospital is very very good so I’m hoping they know what they are doing. I’ll check with them next time I go in. We get meds every 2 weeks because of the flavorings.

Thank you!

Cynthia

[Anonymous]

Ok. So I can’t use the calculator because I don’t know which of the medications to choose on the pull down. None of them seem to fit. However, weight aside, they recommend 1.25mg 3x a day that would be a total of 3.75mg. Zachary is taking 7.5mg twice a day. That is 15mg which is much closer to the 1-2 mg per kg that was in one of the posts you had me read. I get so confused with all the mg/ml etc. I haven’t weighed him in the last week or so but I’m sure he is about 15 pounds now.

[Anonymous]

How do you spread the three doses out? Right now we do first feeding of the day and last feeding of the day.

[Anonymous]

I know how you feel about tummy sleeping. As soon as he can roll over on his own you are safe. My DD who doesn’t have reflux is sleeping on her tummy right now and I can’t do anything to stop her b/c she flips herself there as soon as put her down. Is he pretty close to rolling on his own? If he is then you are probably fine to tummy sleep. I still get up several times at night to check on her, I am a worry wart. We have the Angel Care monitor and used it with DS but it went off 2x falsely and scared the mess out of us and we stopped using it b/c of that.

Also you don’t HAVE to do 3x/day dosing of the meds… we did 2x/day with DS when he was on prevacid and I gave it at 6:30a and 5p or before his first feeding and then before his “dinner”. There are some babies that do fine with 2x/day dosing… I always had a hard time trying to figure out how to get a 3rd dose in so we just never did! HTH.

[Anonymous]

No, he isn’t close to turning over. He hates to be on the ground. He hates being on his back for too long and is not a fan of tummy time. He wants to eat all day so he just mostly tries to eat the blanket. He’s a little better now. I’m slowly getting him to do more of each and trying to entice him to turn over. Hrs getting good with his head though.

[hellbennt]

I can help you w/ mls – what does your bottle say?
it should read something like 3mg/ml or something like that

1. Make sure that your pharmacist does
   not put any kind of flavoring agent in the compound.

2. Make sure that the concentration is
   between 2 mg/mL and 4 mg/mL. This means that for every milliliter of
   suspension, you are giving between 2 and 4 milligrams of drug.

3. Ask that your pharmacist make the
   compound with 16.8% sodium bicarbonate if the total volume of each
   dose is less than 7 mL. If the total volume of each dose is greater than 7
   mL, ask that your pharmacist make the compound with at least 8.4% sodium
   bicarbonate. We also do not recommend that you give less than 3.5 mL of a
   PPI suspension at any concentration. This is because doses smaller
   than 3.5 mL do not provide enough buffer to adequately protect the drug
   from being destroyed by the acid that is present in the stomach.

It is important that the pharmacy does not add flavoring to the
compound as it will almost certainly cause it to lose its stability
much more quickly. It tastes pretty aweful this way, I know, but it’s
better than the alternative.

Remember, Dr Phillips and the MARCI-Kids team do not
recommend the use of compounded PPIs of any kind for infants or
children. We do recommend the use of immediate-release Zegerid Powder
for Oral Suspension. The makers of Zegerid currently hold a patent
which covers any combination of a buffer (such as sodium bicarbonate)
with a PPI (such as Prevacid or Prilosec), and it is a violation of
this patent for pharmacy to make such a compound.

In addition to this, there are no studies that have been done to show
that such compounds made by pharmacies are effective or even safe. This
is another reason why we cannot and do not recommend them.

[Anonymous]

Reflux getting worse. He’s us no linger having silent reflux. He’s spitting up a ton including mist if his meds. He used to take them with minimal struggle and now he fights and spits them out no matter what I do. That’s even with flavor. Calling the doc… I thought things were supposed to get better after 3m, not worse!

[Anonymous]

Ok. Long day! I checked and his bottle says 2mg/ml. He is taking 3.75ml per dose and the pharmacy is using a 8.4% sodium bicarbonate solution. After talking to the dr today about worsening symptoms, he started us on Zantac 1.3ml twice a day. Hopefully being on both meds will help!!

[hellbennt]

make sure to space the two meds 4hrs apart.
also, figure out highest dose of zantac, it’s 10mgs per kilo.

next: get bufferbabies. seriously. get the rx for capsules and make your own compound. the reasons are listed below…

#1) so your dose, which is less than 7mls, should be made w/ 16.8% sodium bicarbonate…

“He is taking 3.75ml per dose and the pharmacy is using a 8.4% sodium bicarbonate solution.”

this is from the U of Missouri:
Ask that your pharmacist make the
compound with 16.8% sodium bicarbonate if the total volume of each
dose is less than 7 mL. If the total volume of each dose is greater than 7
mL, ask that your pharmacist make the compound with at least 8.4% sodium
bicarbonate.

#2)

” 2mg/ml. He is taking 3.75ml per dose”
“[Marci kids says to dose]1.25mg [/kg] 3x a day that would be a total of 3.75mg.” Note my addtion to what you quoted from marci-kids…
so that’s 1.25mgs of prevacid for every kilo he is, 3 times a day.

ok let me try, lol.
you said he’s about 15lbs.
15 divided by 2.2 get you kilos = 6.9 kilos
so that’s 1.25mgs of prevacid for every kilo he is, 3 times a day.
1.25 x 6.9 = 8.6mgs three times a day
8.6 x 3 = 25.8mgs, total for the day, of prevacid
your suspension is 2mgs/ml, so then I divide the 25.8 by 2 to get mls

25.8 divided by 2 = 12.9 mls a day

hellbennt2010-07-01 07:54:59

[Anonymous]

Lol. I thought it said less than 7mg for the solution. Got it. Oh, I didn’t realize it was per kilo! Ok. I’ll talk to the doc. Is bufferbabies yummy? Does insurance cover it? The only way I can get him to even take the prilosec right now is to put it in his bottle of at least 3oz. Even with flavor.

The Zantac helped a bunch last night, but now his gas is even worse! He’s struggling to pass gas pretty much constantly while he’s awake and he’s a bit restless while he’s sleeps (but he sleeps!). He lives on Mylicon already. Any tips?

Cynthia

[Anonymous]

Where can I get bufferbabies?

[hellbennt]

bufferbabies is explained here, last post called Prevacid 101:
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

gas could be from ‘diet’ – sensitvity to a protein in your breastmilk/in the formula. the ‘main’ ones are milk and soy (mspi=milk/soy protein intolerance/allergy) but babies can react to much more than ‘just’ those two

[Anonymous]

So I need to contact Marci-kids to get bufferbabies? Maybe I’m missing something. Could it be that I dont sleep?!

Yes. Trust me, the diet thing is the first thing I tried. No dairy for me and I stay away from soy anyway.

Well. I’m not a big fan of giving my kid anything that is partially hydrogenated, but I guess it’s better than having him suffer with reflux.

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